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Comment by Cori on November 6, 2009 at 2:46am

Windy, I remember those days clearly as they seemed like such a struggle for us. Our son was very recently diagnosed within the past 2 months at age 5 and most of his behavioral issues have dissapated at this time with the occasional temper tantrum thrown in more often then normal but definitely not as severe as it seemed then.

He would never ever hurt a soul or an animal or anything like that, but at times it seemed like he was set on hurting himself. He made all physical mobility standard on time, so looking back on it, we know that it wasn't due to fustration, but he would bang his head on the walls and bite himself, completely bizarre behavior. We thought he might be a bit autistic, but that was quickly ruled out and we learned to live with it, and as we started living with it, we found that trey has alot of OCD behavioral issues...we realized this even before the diagnosis, like he knows where things belong and if they get misplaced, it can start a 'good day' off very stressful for him as he feels like he needs to move everything back to it's normal spot... He as well is very bright, but he seems to be stuck on certain things go in certain spots and establishing a set routine has helped out tremendously for us, being a US Navy family it is very difficult not to be moving around often, etc, but we do our best to explain to him what is going to be happening tomorrow, starting the day previously, 'you have a doctors appointment tomorrow morning', and we start that early the day before...or 'grandma is coming to town this weekend', and for some reason this has helped us out bunches in relating to him...

Again it is weird, but his bad behaviour has definitely stopped, but we definitely try to not make drastic changes for him and if something big is happening on a certain day we start prepping him about it the day before and now he seems way relaxed about everything...and if I am going to be moving something like a lamp or picture, I tell him about it and why and have him help me do it so he doesn't feel this internal need to put everything back where he is used to it belonging...

I hope this helps, maybe something you can try with your little one as he sounds a bit like ours =)

Cori

Comment by Joanna Johnson on October 6, 2009 at 2:29pm

Both of my boys have DMD and we have noticed behavior issues in our oldest son Elliott (almost 6) especially. It's so hard to tell if it's just "normal" or if it is more serious and DMD related, esp. since your son is young. It's common for kids with DMD to have behavior-related issues (on the autism spectrum, OCD, ADHD, etc). There are lots of articles and research documenting this. Anyway, we finally had Elliott tested last spring and he came up as clinically significant for a lot of these issues, but tested very superior and high average as far as verbal and performance IQ. He got services over the summer from our IU (intermediate unit) and she worked with him on social skills and coping mechanisms to deal with the tantrums. It helped, but I feel that this will be a constant battle. Hope this helps.